A lot has changed in the lives of Beth Popa Castelvetere and her husband, Mico, over the past three years — far, far more than what's remained the same.

"I was the most active and fit I had ever been in my life. I used to wear high heels every day. I was getting wobbly, my balance was off. And when I was exercising I couldn't pull up my feet. Gradually it took my legs," Beth said.

The Lexington native has amyotrophic lateral sclerosis, or ALS, also known as Lou Gehrig's Disease since that legendary baseball player announced to the world he had the condition in 1939, 75 years ago.

This week ALS has received renewed attention as the Ice Bucket Challenge caught fire on social media, raising, as of Friday, $53.3 million from 1.1 million donors for research into the disease. That's not a drop in the bucket. The National Institutes of Health, which receives its funding from Congress, has just $40 million budgeted for ALS research this year.

"It took 75 years for something like this to happen. We need this for research money. We have no treatment or cure. How many people really know about ALS? Not too many," Beth said.

She was diagnosed with ALS in January of last year. "I've had a rough five months, but I'm still here," she said.

Beth can no longer walk, or stand on her own. She can't bathe, or put her clothes on. She has only one good arm now, and is starting to lose her voice.

"I really can't be alone, I have no privacy," she said. "You become trapped in a dying body and your mind stays intact. It's cruel and gruesome."

"A 14-year-old son had to take his mom to the bathroom, pull her pants down and back up. You know no 14-year-old should have to go through that," Mico, her husband, said.

Beth said she prefers to focus on what she still can do.

"I can talk, I can breathe, I can still help with homework, still watch my son play golf. We still go to dinner. I can still give a kiss, I can say 'I love you' in my voice. I can still live," Beth said.

She and her husband welcome the attention being paid right now to ALS, which is a progressive neurodegenerative disease that affects nerve cells in the brain and the spinal cord, and they're making the most of the moment. They have been extremely busy this week giving interviews to the media and appearing at public events.

They recommend making donations to the ALS Therapy Institute, which, Beth said, spends 86 cents of every dollar on research. The ALS Association, by contrast, uses just 27 percent of its budget for research.

Because the disease affects everyone differently, the most promising treatment may turn out to be individualized medicine utilizing stem cells.

"I personally don't think I will see it, but I have tremendous hope for others to come. I think the potential is out there now," Beth said.

Beth and Mico have been married for 14 years, although they were divorced briefly in 2012, when her health began to unravel.

"When she got diagnosed I came home. We got remarried," Mico said.

"Last year we were in denial, we were chasing things with different doctors and different opinions. But this winter we kind of got a perspective with what's going on. I see it, I live it. But to be honest, I still don't believe it."

Following diagnosis, ALS patients can experience more than five years of a quality life, up to even 20 years if they're fortunate. Lou Gehrig lasted two years. And 5,600 more Americans are diagnosed with ALS every year.

"I would tell them to sincerely and honestly take each day as it comes and cherish it and not look down the road," Beth said of those new patients, "because you're not there yet."